Bombs & Brain Tumors

At the center of our humanity is a need for connection, and I am a firm believer that God gives us the people we need in our lives, at just the right time. 

20 years ago, God put Bekah in my life. 15 years ago, He made us best friends.

 

Exactly 6 years ago today, He nearly took her away. She had been standing less than 3 feet away from the first bomb that went off, at the finish line of the Boston Marathon Bombing.

10 months ago, the day I was diagnosed with Neurofibromatosis II, she was the first person I wanted to call. She was the only person who would understand. But I couldn’t. 

I knew that if I called her, I would just cry, and I wouldn’t be able to get words out. So, I texted her…

“I was taken to the hospital in an ambulance last night after an episode at home… Apparently a headache I’ve been experiencing for the last couple of days is serious. A CT scan showed multiple brain tumors, one of which is causing seizures on my left side. I was admitted and am having a MRI done this morning and then developing a plan with a neurosurgeon. We definitely need to remove the tumor; it sounds like I will go into surgery sometime tomorrow. I’m so sorry.”

I apologized at the end, because I knew exactly how she would feel after reading it: the same way I felt upon learning that she’d been blown up by a bomb. 

Her next message was plain and simple, “I’m getting on a plane today. I love you.

Upon learning of my condition, there were several people who jumped on flights, and in their cars to get to Colorado, but Bekah was the first one to arrive. She even beat my dad and stepmom by a couple of hours!

As soon as she walked into the hospital room, she jumped right into bed with me, and both of our eyes filled up with tears.

Neither of us needed to say anything; she knew exactly how I felt, and I knew exactly how she felt. I’d grown accustomed to seeing her in a hospital bed, and she’d gotten used to me visiting… neither of us expected to have the roles reversed.

That night, after all of our visitors left, and the hospital became quiet, Bekah sent my husband home. He knew I was in good hands, and I knew he needed a good night of sleep.

Like any reunited friends do after time away from one another, Bekah and I stayed up talking, laughing, and crying until the crack of dawn. Eventually, she took her prosthetic leg off.

When a nurse came in to take my stats, Bekah joked, “let me move my leg for you.” My nurse smiled comfortably, as only nurses know how to do, and casually asked what happened.

It was a story I had heard so many times before, but that night, something was different as I listened to Bekah talk about how she had been less than 3 feet from the first bomb that went off, separated from her 5 year old child, rushed to the hospital, and finally had her leg amputated due to the severity of her injuries.

As she spoke, I mentally filled in the blanks, remembering how mangled her body had been, how her hair had been singed away by the blast, how she’d endured 67 surgeries, how much shrapnel was still embedded in her muscles, and how many nights she’d called crying. How she’d almost died.

Bekah

But, in true Bekah fashion, she never got lost in the horrific details of that experience. She always stayed positive; stating the facts and how she’s grown as a person because of it.

She said, “Being a victim is a not a choice, but being a survivor is.”

Although that night was like so many others we’d spent together, it will always stand out in my memory. It was the night I decided to be a survivor too. 

When the time came for me to go home to my family, and Bek to get home to hers, she left me with a necklace that said “Be Brave.”

Around her own neck she wore “Be Strong.” It had been given to her as a gift after the bombing. It had come with a match, ‘Be Brave,’ and a note that said one day, she would know who to give it to.

be strong be brave

She’d held onto ‘Be Brave’ for 6 years before placing it around my neck.

I wore it every day until surgery. It was exactly what I needed to overcome my own challenges. Every day I would look at it and be inspired to find the beauty amid tragedy, just as she had.

Brave

After my first craniotomy, the first words I said were, “God is not done with me yet.

If you’ve been following my story, you already know this. What you may not know is that it was a subconscious line that I had heard before… they were the same words Bekah said upon waking from her medically induced coma after the bombing.

In a state of semi-consciousness, we both said the exact same phrase during the toughest moments in both of our lives.

Perhaps it is all of those years of friendship that have entwined our strength together, or maybe, just maybe, those words are true;

God is not done with us yet.

This is our story, and it is not over yet.

A letter to my sons, written the night before brain surgery

July 19, 2018

Dear Meatball & Rooster,

boys2

One of life’s most precious gifts is that it is fleeting. Everything you’ve ever known can change in a second, a minute, or just a few hours.

On Sunday, June 24th, 2018, I had a seizure on our kitchen floor, right in front of you while you were playing together with Play-Doh, and was rushed to the hospital in an ambulance. We found out hours later that I have tumors in my brain, ear canal, and spinal cord, and they’re beginning to show symptoms, requiring surgery.

While this is all very new and scary, my decision to move forward with the surgery is intentional, and I’m doing it because of my love for you. I have so much to fight for, and I need you to know that I am doing this because YOU are worth it.

Boys

As the days have passed, and we draw nearer to surgery, we’ve had the unique opportunity to look at life through a new lens. Everything is different, and yet nothing has really changed at all; we simply have knowledge that we didn’t before June 24th and a diagnosis that wasn’t there before.

I’ve never taken our time for granted, but still each moment seems sweeter now, and its an incredible blessing to experience life this way.

The little things are the big things; watching you sleep, and imagining all of the things you’ll accomplish in your lifetime; taking you to a baseball game; holding your little hand as long as you’ll let me; teaching you to ride bikes; and hearing you giggle. I find myself staring at you often, trying to capture each memory and hold onto it forever.

My prayer is that one day this will all be a distant memory; a thing that happened; a chapter that has closed. Although you are both intuitive, I know that you are too young to remember all of the details of these pivotal moments. But, your daddy and I will remember, and when you’re ready, we will remind you of how these days unfolded, and why we made the choices we did.

I want so badly for this to be a story of strength and triumph that will inspire you to live your best life without fear of the unknown. I want to watch you grow up, and face your own challenges head on. I want for you to see that life is a beautiful thing that should never be taken for granted.

We are never promised tomorrow, and we need to make each day count. There are things that are within our control, and things that we have to leave to faith. So, for now, I am simply trusting that God’s plan is the same as mine.

If there is one thing I can weave within these words and capture here for you forever, it would be my undying, unrelenting, neverending love for you. It is something truly tangible that you have the ability to carry with you long after I’ve left this earth.

Please, don’t ever doubt the power of a mother’s love for her children.

Mom

I love you all the stars in the sky; I love you all the angels in heaven; I love you all of the leaves on all of the trees; I love you all of the fish in the sea; I love you all the raindrops in the ocean; I love you all of the miles to the moon and right back down again.

Love,

Your mommy

 

Appearances

Physical appearance is exactly that; an appearanceAnd, appearances can be deceiving, especially when there is so much that lies beneath the surface.

Many conditions that are completely invisible to those not experiencing them first-hand. Neurofibromatosis II is often one of them.

After having my second craniotomy, I didn’t want to be labelled or defined by a diagnosis, or as a ‘sick” person, so I put a lot of effort into my appearance; making myself look “fine” on the outside.

I covered my PICC line with a long sleeved shirt, used makeup to hide the dark circles under my eyes, and cut my long blonde hair short to help blend in the multiple bald spots that had been shaved away during surgeries. I even learned to style it just right so that the majority of my stitches were covered.

In hindsight, my efforts were a bit vain. But, my appearance was one thing I felt as though I still had control over, when so many aspects of my life and health were spiraling out of control.

The truth is, you can’t see brain and spinal tumors on the outside. You can’t see exhaustion, brain inflammation, dizziness, or tinnitus. You can’t see remnants of seizures; numbness and tingling. You can’t see pain.

Part of me was grateful that strangers, co-workers, and even my own children couldn’t see all of the symptoms that were laying right below the surface. “You look great!” they would say. And I let them believe that I was great.

Another part of me wanted to wear a t-shirt that said something like “fresh out of brain surgery” so everyone would understand.

I remember walking into a neurology appointment one afternoon, just two weeks after surgery, with high hopes of having my stitches removed that day. It was one of those days; I’d had a migraine, and a hard time getting out of bed. The hour long drive to the medical office has zapped all energy I had left, and my body was physically shaking as I walked from my mom-in-law’s car to the building (she was kind enough to chauffeur me when I couldn’t drive). I actually wondered if I might pass out before I got to the door. A man was walking in ahead of us, but my legs weren’t moving fast enough. He glanced back, saw that I looked “fine,” and let that heavy door shut right in my face.

It was the first time that I wanted to scream “I just had brain surgery!!” How could he not see the pain I was in, and how much I was struggling?

What I didn’t realize at the time, was that there would be many more moments when I wanted to scream and shout until everyone ‘got’ it.

There would be moments at work when I would cry in the bathroom because a sudden migraine had hit, and I couldn’t open my eyes against the light over my desk; there would be moments when I had to hide from my children because their normal sounds would make my head pound.

I was not fine.

My brain had just been tampered with – twice in 3 months. A portion of my skull had been removed, and was now being held in place by 5 titanium ‘snowflakes.’ My scalp was held together by thread. Just to get out of bed each morning, I required a handful of medications and an IV infusion to keep the infection from coming back.

I took roughly 25 pills per day, had a home health nurse who cared for me, and relied on my husband to push antibiotics through my PICC line multiple times per day.

One day, I would be “fine” again, but for now, I was broken. And that was okay.

OK

True healing takes time. Although I’ve never exactly been patient, I knew I owed it to myself to take the time I needed.  Eventually, I knew healing would come, and when it did, I would hold the door open for every person behind me, even if they appeared to be “fine.”

This is my story, and it is not over yet.

What, like it’s brain surgery?

As humans, we have a natural tendency to try to fix things that are broken. The problem with an incurable illness is that it cannot be fixed. There is no cure. Yet, we try anyway.

Two days prior to my scheduled craniotomy, my surgeon called. If you have a neurosurgeon, you know that getting a direct call from him or her is rarely to discuss the weather. This was no exception.

My latest MRI scan showed that the largest of my tumors (about the size of a large strawberry) had grown into the main vein that supplies blood flow to my body. He sensitively expressed concerns for cutting off blood supply to my brain (which would kill me), or causing a stroke and deficits. He still felt strongly that surgery was my best chance of survival as the tumor would continue to grow and eventually cut off blood supply on its own anyway. We had to do something.

I hope you’ve never had to hang up from a call like that.

All I could think was, “I want to live!”

I had worked hard and achieved so much out of life, but I hadn’t gotten to LIVE it all yet. It felt like we were just getting started. I still wanted to travel with my husband, finish our basement, and develop my career. I wanted to see my children grow up; the baby was born just last year! What sports would they play? What books would they read? Who would they decide to become?

I’ve always been a firm believer in talking to my children and telling them the truth. They’re young, and incapable of fully understanding such a BIG situation. But, when we talked to them, they understood “it hurts,” “I’m scared,” “I need the doctors help,” and “I’m doing this because I love you so much that I have to try.

I made it my mission to do everything I could to make them feel loved before surgery. Our favorite was going to Build-A-Bear so we could make “friends” to keep each other company while I was hospitalized again. I recorded my voice telling each of them how much I loved them so that they could hit the button whenever they missed me. Subconsciously, I also knew that if i didn’t wake up from surgery, I was leaving them with a beautiful memory, and a recording of my voice to remind them every day how big my love was.

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They made me a bear too, Buddy. He was a black and white Star Wars bear with yellow power ranger pajamas and a light saber. He was perfect. When we got home, I put him straight into my hospital bag. He was going to surgery with me.

Our 4 year old wanted to make beaded necklaces that said “forever,” so we knew “we are always together even when we are apart,” (yeah, he’s insightful). So we did. And, that night, I rocked my 1 year old, my last baby, in the silence of his room. When that wasn’t enough, I climbed over the railing and laid in his tiny little crib with him until he fell asleep.

Long after everyone else in the house was asleep (we had a full house!), I stayed up to finish writing a letter for my husband to read while I was in surgery. It included some helpful hints, like our Amazon password, what size clothes our kids were currently wearing, and a reminder to not ever feed our boys McDonalds, no matter how bad it gets! I also told him how much I love him, how he changed my life, and how hard I would fight to be there for him at the end of the day. Then it was time to try to sleep (yeah, right).

When my alarm went off at 4am, my eyes were already open. I didn’t bother with makeup, afterall, I was having a major craniotomy. But, I did take extra time to style my long blonde hair, knowing it would be the last time.

Then, I took off my jewelry; my wedding rings and a necklace that said “Be Brave.” I hadn’t taken either piece off since I left the hospital after being diagnosed. I took a deep breath. I felt totally exposed.

Brave

Upon arriving at the hospital, our medical team started fussing over me right away; there were papers to sign, IVs to put in, one last MRI to double check blood flow, and markers to be placed for navigation.

In order to properly place the markers, 8 patches of hair were shaved away by my nurses. I grit my teeth together as the buzzer shaved away, and closed my eyes so I didn’t have to see my long blonde hair hit the hospital bed or thrown in the trash. When the last marker was placed, I ran my hands through my hair, and huge clumps fell into my fingers. Without a word, my husband held out his hand to take the strands. And then he held me so I could cry.

In hindsight, it was such a trivial thing in the big scheme of things… to cry over a few spots of shaved hair. I know that hair grows back. But, it was the moment that everything hit me. This was happening. I was having brain surgery. And, I might not wake up from it.

My neurosurgeon came in, scribbled his initials on the right side of my forehead in blue marker, shook my husbands hand, and then it was time to go.

In the operating room, one of my anesthesiologists introduced herself, helped me settle on the table, and then placed the mask over my nose and mouth. She told me to take a few big breaths.

As I did, the room started to fade away. My last thought was “I want to live. Please God, let me live.”

And then I was out, and it was all between God and my neurosurgeon.

This is my story, and it is not over yet.

23 Days

I was fresh out of the hospital, newly diagnosed with NF2 and an emotional trainwreck. One minute I was elated to sleep in my own bed and not be poked for blood at 4am, the next I was frustrated from being in pain, and afraid of having more seizures.

Walking through the garage door into our kitchen was tough. The last time I had been in that kitchen, I had fallen onto that turquoise rug by the sink from my first seizure, the one that changed everything.

Rug

Now, the house was busting with company; friends and family had flown in from all over the U.S. to support us. Upon my arrival, our ‘guests’ quickly busied themselves with laundry, cooking, and grocery shopping so I could rest. I woke up about an hour later to find myself alone in the house while my husband picked up my prescriptions, my dad and stepmom picked up my brother and sister-in-law from the airport, and my mother-in-law picked up my kids. Never underestimate the power of an amazing support system!

I turned the shower on and stared at my face in the mirror while the water warmed. Did I look different? My reflection appeared the same on the outside, but on the inside, I was completely overwhelmed. My husband had stayed with me every minute in the hospital and I had stayed strong for him. I knew that if I crumbled, he would too. But, here, all alone, in our home, I allowed myself to feel the emotions that I had suppressed; anger; frustration; confusion; fear.

kneel

Instinctively, I fell to my knees on the bathroom floor. As the shower ran, I cried. And then my cries turned to screams. I screamed for my children and the possibility of them having NF2 too; I screamed for my husband because he doesn’t deserve this; I screamed for my dad because the worst thing in the world is to watch your child suffer. And then I screamed for me. I screamed out all the “why is this happening” and all of the “why me’s.” I screamed out all the frustration of being diagnosed with an incurable illness, and all my fears for what was next.

And then I prayed. I prayed like I had never prayed before. I prayed for all of the things I had screamed for just moments ago.

And then I was done. I have never been the type to linger very long in a self-induced pity party. I decided that would be my last tantrum; besides, my 4 year old was better at it anyway. I stood up, wiped the tears from my face, and let the shower wash away the hospital. Is it just me, or is there something seriously healing about a hot shower?

I had 23 days before I would be readmitted for my first craniotomy. It was the best gift I could ask for, and I was ready to make the most of it. 

I would never wish NF2 on anyone, but for the first time, I appreciated the diagnosis. It gave me the unique opportunity to look at life through a different lens, and reevaluate what was really important. I held my children longer, kissed my husband more often, and told all of the people I love that I love them. I fell in love with life again.

We took our boys to the park just to watch them play, introduced our 1 year old to the movie theater, brought our 4 year old to the best steakhouse in Denver, lit fireworks in front of our house on the 4th of July, and drank the expensive wine.

wine

A week before surgery, we took our boys to a Rockies game with one of my oldest friends who had flown in with her family from Kentucky, where I was raised. If you have brain tumors, I know what you’re thinking; the noise; the walking; the pain! But I went anyway, because I wanted so badly to see the joy on my boys faces and to experience something that had been normal for us before my diagnosis. I did it! I walked all the way around the stadium, cheered for the Rockies, and helped my babies to clap in all the right places, despite the noise. The Rockies lost that night, but I have never enjoyed a ballgame so much.

5 days before surgery, our best friends offered to take our boys for a fun sleepover, and Josh arranged a weekend getaway in Estes Park for just the two of us. We had some tough conversations about what could happen on the day of surgery, cried a little, laughed a lot, fed the squirrels on the mountain, and finished our weekend getaway with a great dinner at the Stanley Hotel.

Estes 2

By the time I went in for surgery, I had never been more certain that this life is so worth fighting for. I was ready.

This is my story, and it is not over yet.